Caring for people living with Motor Neuron Disease: A qualitative study of challenges and coping among informal caregivers in South Africa
| dc.contributor.advisor | Kagee, Ashraf | en_ZA |
| dc.contributor.author | Allan, Bailey Claire Isabella | en_ZA |
| dc.contributor.other | Stellenbosch University. Faculty of Arts and Social Sciences. Dept. of Psychology. | en_ZA |
| dc.date.accessioned | 2025-05-05T09:53:51Z | |
| dc.date.available | 2025-05-05T09:53:51Z | |
| dc.date.issued | 2024-12 | |
| dc.description | Thesis (MA)--Stellenbosch University, 2024. | en_ZA |
| dc.description.abstract | Motor neuron disease (MND) is a progressive and fatal neurodegenerative condition that is increasingly impacting individuals and their families globally. Despite being relatively rare, the prevalence is rising due to an aging population, with significant socioeconomic consequences, particularly in countries with fragmented healthcare systems, financial challenges, and limited resources and skills, such as South Africa. Family members often assume the caregiving role, leading to substantial caregiver burden in a context where support is lacking. Against this backdrop, and given the scarcity of research on MND within South African communities, this study aimed to investigate the challenges faced by caregivers of individuals with MND and the coping strategies they employ. The study adopted an exploratory and qualitative approach to gain an in-depth understanding of lived experiences. Semi-structured interviews were conducted with 17 informal caregivers of MND patients across South Africa. The data, transcribed and analysed using thematic analysis, revealed insights into the caregiver burden through Lazarus' Objective and Subjective Burden of Care perspective. The narratives emerging from this framework included objective burden being physical strain, the impact on caregivers' social environments, and difficulties with healthcare services, while the subjective burden encompassed perceived loss of love and self, guilt, and emotional impact. The study also identified coping strategies using the Transactional Model of Stress and Coping, with emotion-focused strategies encompassing religion, acceptance, and denial, while problem-focused strategies included healthcare support, support groups, self-education, and family support. The findings indicate that caregivers of individuals with MND undergo an intensive burden of care with limited support, therefore proposing a call for further research to address these gaps and improve support for informal MND caregivers and those they care for. | en_ZA |
| dc.description.version | Masters | en_ZA |
| dc.format.extent | 199 pages | en_ZA |
| dc.identifier.uri | https://scholar.sun.ac.za/handle/10019.1/131978 | |
| dc.publisher | Stellenbosch : Stellenbosch University | en_ZA |
| dc.rights.holder | Stellenbosch University | en_ZA |
| dc.title | Caring for people living with Motor Neuron Disease: A qualitative study of challenges and coping among informal caregivers in South Africa | en_ZA |
| dc.type | Thesis | en_ZA |